Our "Animated" Christmas Card

Like most moms I know, I spend a chunk of time figuring out our Christmas card.  What message do I want to send?  What should we wear?  I hope Maddie is awake.... etc etc.  Below is the Christmas card that we mailed out. 

But, I could've just sent out a simple piece of paper with a web address to summarize our family's year.  Last month, Madelyn's Hero Story was aired on WXOW.  We worked with Dustin Luecke to get footage of our family in the community.  As Madelyn's mom, I am protective of how others perceive her.  It was important to me that she didn't look sick or unresponsive.  We know all of the great things that Maddie can do, but she certainly has her moments where she'll just sleep through an event.  I had my fingers crossed that the story would show the Maddie that we know her to be.  And it did.

Merry Christmas!

Recent CMN Happenings

Click this link to hear our Children's Miracle Network advertisement, which is set to "Here Comes the Sun".
CMN Radio Ad

The Radiothon was such an exciting time for our family.  Madelyn's family members, friends, and school support staff showed up to answer phones during her hour.  And wow, were they successful!

Thank you to everyone who called in to donate!  We had 37 calls and raised over $3600 in her hour.

Team Maddie

Summit Elementary Staff

Maddie's Miracle Phone Bank Team

Up next for us is Madelyn's Hero Story, which will air on WXOW at the end of November.  We've been working on this with Dustin Luecke and are excited to share all the great things happening for Madelyn in our community.  

Thanks for all the support :)

When the Bright Side gets harder to find

This has been a rocky start to our school year, and I have to say that I'm struggling to see the bright side of things.  As I write this, Madelyn is laying on the recliner next to me, hooked up to oxygen after a Sunday spent at the hospital.  These occurrences have somewhat become our normal.  In the 30 days of September, Madelyn has had 6 appointments at our local medical facility.  She's had 4 trips out of town for her specialty care.  We've become used to always being on the go after work and on our days off- a trip to St. Paul for a scoliosis brace, sure!  A trip to Minneapolis for an orthopedic procedure, why not!  Another trip to St. Paul for the immunologist, no problem!  That's our job as Maddie's parents- to make sure she gets the best care possible, wherever that may be.  It may be exhausting hauling a medically fragile child on a 6 hour round trip car ride just to see a doctor for an hour, but we've made it work. 

What gets challenging for me- the highly organized, always trying to be positive, constantly scheduled mom is the unplanned events related to Maddie.  This weekend was the Oktoberfest parade.  Maddie was sick with a cold at the start of it, and by that evening she was seriously sick.  The next morning, we're meeting with our doctor about respiratory supports and the pros and cons of hospitalization as it relates to her palliative care plan.  We're home now, but that doesn't mean she's better. That's something to get used to too.  We'll take over providing respiratory treatments and monitoring her oxygen.  I'll take off work tomorrow since Greg has taken off a lot these past few weeks.  We'll get through it. 

Seizures.  Another challenge for us.  They show up at the worst time.  Madelyn has had two prolonged seizures at school this month.  Each time an ambulance had to be called.  And each time, I was at work, in a meeting.  Getting called by your child's school to hear that an ambulance is coming for your daughter is terrifying.  What makes it worse is the logistics- telling your coworkers you have to leave, trying to find your keys, getting through traffic without getting in an accident, and making it to school to get to your daughter's side without totally falling apart.  One time is what you think of as the worst case scenario.  And when it happens again, it's hard to process.  Worst case scenarios can't keep happening, right?  I really don't wish this aspect of our life on anyone.  There are many amazing aspects of being a special needs parent, but this is not one of them.  Madelyn has recovered, and she will forget it happened.  But Greg and I won't.  We won't forget what we were doing when it happened or how we felt.  We won't get over the fear of it happening again, and furthermore the fear of what if she doesn't recover next time. 

We have absolutely no tie to St. Jude Children's Research Hospital.  But, like the rest of you, I see their commercials and I remember the phrase: "Be thankful for the healthy children in your life and give to those who are not."  For whatever reason, that phrase comes to my mind frequently.  And that's what I'll end with here.  Be thankful for the healthy kids in your life!  Send positive thoughts and prayers to those who are not.  Give us your patience.  I know that this will pass and we'll get through it (hey Madelyn is almost 4 years old!).  Help us remember the bright side. 

xoxo
Sarah

Giving Madelyn a Voice

Over the past year, I feel that I have been given a platform and duty to give Maddie, and kids like her, a voice.  As I shared one year ago, I was asked to write an article for Minnesota Epilepsy Group and Children's Hospital of MN.  This was a wonderful opportunity.  In January 2017, we were approached by Children's Miracle Network as Madelyn was asked to be a hero and brand ambassador for the next year.  Again, this was such a gift to our family.  Last week, I was extremely honored and surprised to be asked by Ron Kind's office if I would speak at a press conference with him regarding healthcare accessibility and affordability, as it pertains to children with special medical needs.  Needless to say, I was shocked.

We've done a few CMN events so far, and I have to say that I leave each event feeling more empowered than the last.  I give our family's speech in front of the 100 or so people at said banquet, and I feel supported.  I am becoming more and more comfortable sharing Madelyn's story.  And, I am also seeing the good that comes from it.  There is such a need for people with disabilities to be better understood, to be included, and to be supported in society.  After each speech, I have had community members approach me thanking me for sharing our story, and more importantly, thanking me for the greater understanding that they now have.  I can literally feel people's compassion and acceptance grow in that room.

Thank goodness I had had these positive CMN experiences as my foundation to public speaking.  When a congressman asks you to speak at a press conference, you don't say no.  :)

Below is the 23 minute, unedited press conference.  I speak from 7:10-10:08 if you want to skip ahead.

I am so thankful for these opportunities, and I look forward to what is it to come.  I'm confident that this won't be the last time I climb my platform and give Madelyn a voice.  

Thank you for watching!

She will teach them....

Madelyn is wrapping up her first year of school as an Early Childhood student. Last fall, her extensive IEP was written.  One of the therapists on her team wrote "besides her above mentioned challenges, Madelyn also has many gifts".  She went on to write "she will teach them about patience, gratitude, love, and compassion".  This was written in reference to Madelyn's impact on her classmates.  However, anyone who knows Madelyn would agree that she teaches this to everyone she meets.  This was one tiny section of a massive document, but it has stuck with me all year and I constantly find myself repeating it in my head. That sentence sums up how Madelyn has shaped us as parents and as people.  That sentence also is a beautiful description of how she's been received by her classroom and school community.

As a parent, it's hard sending your kid to school.  It's especially hard when your child is medically fragile and can't tell you how her day went.   But, in true Madelyn fashion, she has shown us that she can handle it.  She has blossomed over these last several months.  She's smiling and laughing at her teachers.  She shows excitement at school assemblies.  She drives her Mini Cooper around PE.  She participates in crafts, listens to stories, and enjoys music time.  She's watching her peers and taking it all in.  All we've ever wanted is for Madelyn to feel loved at school and to be accepted.  And she is.  There are obvious challenges, but that therapist was right.  She has taught her classmates and her staff about patience, gratitude, love, and compassion.  And we become more proud of her each and every day.

Swinging

At a school assembly

Using scissors for the first time!

Planting her Mother's Day gift

Not impressed with Dr. Seuss day

Driving around PE class

Painting with her classmate